Disease is a funny thing. 

My best friend A, the only doctor I will trust my life with, explains to me the etymology of the word, how it means to have a “lack of ease”; and that disease-specific treatments, however terrifying they may sound, aim to bring back ease into one’s life. 

Over the last few weeks, as I have been faced with decision after decision about what happens next, I go back to this. Disease is merely a lack of ease. And that ease can be restored in a multitude of ways, some more arduous than others. 

I am sitting in the living room as I write this. There is a soft breeze, the house is silent as it usually is. Right now, there is so much ease in my life, it feels like heaven. In this way, I begin my treatment. 

***

Disease is a funny thing. 

I am having a conversation with S, someone who has had her own battles with cancer. I like talking with S because to her, I’m still me, A, a girl who writes, wants to get her septum pierced, and is also dealing with a breast that isn’t behaving the way it should. Talking with S is refreshing because while she understands the trials and tribulations of this journey, she doesn’t try to pigeonhole my existence with this one experience. I do not need to sugarcoat my feelings with S – I can reveal the darkness and also sit in the light. She understands the duality of this existence. 

Over pizza and cocktails, we speak about how disease becomes hugely performative. 

I share that people often ask me how I am and seem surprised when I say I’m fine. It’s almost as if people expect me to have morphed into a different person with the diagnosis – someone who becomes needier, frailer, someone who needs constant reassurance that everything will be okay in the end, that everything happens for a reason. 

S laughs, nods, shares her own stories, and the -isms that used to irritate her. We talk about triggers, and the need for control. We discuss doctors, and the need for multiple medical opinions. Cancer words – mastectomy, hormone positive receptors, chemotherapy – slip in and out of the conversation. I talk about the radical changes I want to make in my life. She shares about the various exciting projects she is currently working on. 

There is disease. There is also the sun that is slowly setting around us, bathing everything in a golden glow. I feel alive. 

***

Disease is a funny thing.

It teaches me more about other people than I could have imagined. 

I watch how people struggle to find words when they talk to me. I sense how pressured they feel to reassure, to support, to show that they care very much. I understand this struggle, I have been there before. Words become deeply inadequate in the face of strong feelings and emotions. I force myself to look past the words and touch the love that underlies their actions. I hold it close, take strength, let the words fall over me like rainfall. 

I see how much people struggle with being a witness to disease. I see how they so desperately want to be compassionate, how much they want to be helpful, how it makes them feel better if they believe themselves to be alleviating my sorrows. I understand this too; there is nothing more debilitating than feeling helpless when the people you love are in pain. This time though, I understand something else. I understand what it is to be on the other side, on the receiving end of things. I understand what a double-edged sword this can be, how inadvertently, in our need to show that we care, our love can become shackles. I find myself being burdened by people’s discomfort, and on some days, it becomes too much to bear. I carefully take the weight in my hands, unravel the knots, unhear the voices, take firm steps backwards until I am far enough that there is enough distance. I place the weight on the ground. I turn my back to it and keep moving. This discomfort is not my cross to bear. 

***

Disease is a funny thing. 

I dissect my observations with W, who is relentless in asking me over and over. What do you need, A? What do you need? 

Some days, it is easier for me to answer this question. Today, I need exercise, I say. I have a lot of frenetic energy that needs to be dispelled. She holds me to task, tells me to get 30 to 45 minutes of cardio minimally. I go for a long run. I am huffing and puffing, it is too hot, my heart rate goes way up. I feel like I can take over the world. 

On another day, I say I need to cry. I tell W that things have been stressful and that there are too many things out of my control, and it is all too much. W watches patiently as I wail and sob. There is no pity in her gaze as I blow my nose multiple times and speak to her through hiccups. By the end of our conversation, there is a distinct sense of relief. The pressure valve was let open. There is now space for other things.

Sometimes, I don’t know what to say. I stare into the space and the silence stretches on. I finally speak, I don’t know what I need today. W nods. That’s okay, she replies. We smile at each other. I settle into this familiar, liminal space. 

***

Disease is a funny thing. 

Some days I look at myself; I am floating above me, working hard at my full-time job, yelling at my dog for doing something naughty, getting frustrated that I had forgotten to run the wash the night before. I watch myself pad around the house, switching on fans and turning off lights, washing the dishes and staring creepily into the opposite block because the neighbours forget to draw their curtains close. 

I laugh at the dissonance of it all and am reminded that the business of living continues even as the business of disease is being dealt with. 

I drink a glass of hot water. In the distance, a family of parrots continue to frolic among the treetops. 

…
Arathi Devandran curates personal experiences, snapshots of the world and the stories people are willing to share with her through prose and poetry www.miffalicious.com

Disclaimer: All opinions and views here are my own.